New diagnosis

[UnicornGrandma]

Hello I’m new. I was just diagnosed this morning with Stage 3b CKD. I’m having a hard time wrapping my head around it. My creatinine has been coming back elevated for more than a year but my PCP kept telling my it was nothing. My most recent levels came back higher than ever with a eGfr of 42. So I saw a nephrologist for the first time today and because of my lab trends she came up with the diagnosis. My question is how can I keep the damage at bay. What lifestyle changes are suggested. And how do you accept the diagnosis?

[KnitPrincess]

I need to know the same information. I didn't get to see the nephrologist until October!

[Mgt8]

Hello Unicorn Grandma,

First being diagnosed is always a difficult thing to come to terms with. One day we're told we're fine and suddenly we have this "thing" hanging over us. My plan on hearing was to find out as much as I could. It made me feel I was doing something about it. The medical side is only one part. Speaking with other patients is just as important.

Well done for reaching out. This forum is great for a patient point of view.

Watching what we eat and drink is a good way forward. Drink plenty of water; it helps our kidneys work more efficiently. Regular exercise is also a good way of preserving kidney function.

Keep all appointments and keep an eye on your egfr which is an indication of Kidney function. In the UK there are charities like Kidney Care UK & the PKD Charity which are a great source of information. I am sure there are similar charities in the US. Have a look at their websites or give them a call. As well as information, they can suggest groups you can join in your area to meet with others in a similar position.

It can be a worrying time but there is support out there.

I'm sure others have ideas too so keep an eye on this thread...

My best wishes,

Mgt

[userotc]

If you view some/all of my posts and replies (by clicking onto my "name"), you'll see numerous comments on Nutritional Therapy which I believe is key for early stage CKD (1-3). My mum has maintained stage 3a for ~14 years. Others on here prefer a more restrictive, renal diet.

We accept the diagnosis as one of life's challenges - to be managed.

[lowraind]

I find that Cleveland Clinic, Johns Hopkins and Mayo have helpful information. I found the work by Mathea Ford, RD/LD very helpful, as well as many of the people on this site.

[WYOAnne NKF Ambassador]

First thing you need to do is educate yourself. A good place to start is with the NKF website kidney.org They even have diet suggestions and recipes. Stay hydrated. With the heat this summer it is easy to forget to drink. Dehydration can make your creatinine rise and eGFR drop. The NKF makes the whole "journey" not so scary. I find the more you know the more doctors take you seriously and less frightening for you.

We are all here for you. I was diagnosed in 1992 with FSGS from Strep throat and nephritis I had when I was a kid. Thirty years later I was in kidney failure. I had a transplant from a deceased donor in 1999. I continue to do fantastic at almost 25 years post transplant.

Take care!

[GoodHealthIsAJourney in reply to WYOAnne]

If you don't mind my asking, how did they determine it was from strep throat? Did you remember an untreated infection, or can they test for that? Thanks!

[WYOAnne NKF Ambassador in reply to GoodHealthIsAJourney]

When I had strep it was treated, but I wound up in the hospital about 2-3 months later with Nephritis. The nephritis damaged my kidneys. Drs. said it was likely that it would reoccur later in life. And it did about 30 years later. I am not diabetic and didn't have any other med problems so they did a biopsy. One of my kidneys was already smaller than the other. They biopsied the healthier looking R kidney and found I had FSGS, just means my kidneys were getting all scarred up inside. Today, if I have an ultra-sound you can hardly even find my native kidneys - they both have shrunk so much...

By the way, what is your age? As we get older in 60's and 70's our kidney function declines and it doesn't mean we have kidney disease. My husband is 74 and his creatinine is 1.3 , but no symptoms of CKD.

[UnicornGrandma in reply to WYOAnne]

Hi WYOAnne

I’m 56 and this was totally unexpected even though there is a family history of kidney issues.

[RNMeemaw]

I'm in the same boat. Do you have high blood pressure? Heart disease? Taking meds that are harming the kidneys? Diabetic? If so, a change of diet and possibly a change of meds & implementing an exercise routine may be in order. Many people don't progress past 3b for the rest of their life. I've been there for several years now. I only have one kidney anyhow but have had sepsis & septic shock 12 times now. Either the strong antibiotics, the vasopressors used to raise my BP or the persistent low BP has damaged mine. I hope that helps some

[UnicornGrandma in reply to RNMeemaw]

Hello RN Meemaw,

I do have high blood pressure and I’m pre diabetic and I have rheumatoid arthritis. My nephrologist said part of the cause could be that I spend several years taking NSAIDS for my RA pain. I need to find an alternative for the pain. And I need to change my diet.

[RNMeemaw in reply to UnicornGrandma]

Yes, NSAIDs too. I too have chronic musculoskeletal pain & have taken ibuprofen a lot throughout my adult years. I have an intrathecal pain pump now, but on bad days (at least 3 times a week) I still have to take something. It's a shame, because it works the best

[barbara55109]

How old are you? She related kidney decline is a NORMAL part of aging. Since there are no treatments until later stages, most of us don't get diagnosed until stage 3 or 4. You don't include your age, but do say you are a grandma. In the past I've posted many articles about age related kidney decline. If you are 40 with a eGFR of 42 that's very different than being 80 with a eGFR of 42.

[Beachgirl32]

lots of good advice giving to you I know I stay in stage 3 for along time watch diet and excercise

I stay I. Stage four for about five years when stage five hit it went from four to five fast . It best to educate yourself what work for you we are all differnt but ask lots of questions. I’m fairly new to hemodialysis and they tell me you sure ask a lot of questions and sometimes I can’t believe I’m the only one who ever ask a certain question but I’m told nope no one never ask that so any question ask your doctor

Accepting it a part of your life now it may be a hard journey but think how far we have came in kidney disease I’m 68 when my grandma was first t with polycystic kidney disease like me she didn’t have a choice of dialysis or transplant we do we even can do dialysis at home my grandmother died in her early 50 I have outlive her I just grateful for how far thing have came that how I accepted my kidney disease do t know if that help.

[S_dillow]

i take it one day at a time,watch my diet,exercise as im able and enjoy sunrises and sunsets.it is what it is and i advocate for myself since the doctors,etc wont.